Emily Barker

I was able-bodied for most of my life. When my accident happened, there were all of these things I was amazed no one knew about. I was just floored that people are kept so protected, as though people with disabilities are like lepers in the Middle Ages. I experienced having all of these easy-to-accomplish activities taken away from me. The realization that just getting to the grocery store was going to be difficult, doing laundry was going to be difficult, parking was going to be impossible, and getting medical treatment was also going to be impossible—that’s heavy stuff. I share these things because I don’t really feel like I have a choice but to talk about it.

At the time, I had a very small personal Instagram. But after a lot of really painful and messed-up experiences—either in the hospital or trying to park in a disability parking spot and not being able to get my wheelchair out of the car and having to go home—I felt compelled to start sharing those experiences more publicly. I was shocked that schools and institutions like museums didn’t want to make accommodations. I was shoveling snow myself in order to get from my apartment building to my car because my neighbors wouldn’t let me trade parking spots with them, even if I paid them. I was just really done with all of it, and so I started using my Instagram as a means to have conversations with my community. And because I’m chronically ill and disabled, it’s the only platform I can really use consistently. 

I had no intentions of being a disability advocate. I just ended up having to advocate for myself as a form of survival. But I got a really positive response and was able to reach a lot of people in a short amount of time. It sort of snowballed from there. I did some modeling and I was in Little Nas X’s music video for “Rodeo,” and then got a feature in Vogue and Vogue Italia. I was milking the algorithm’s preference for selfies so that I could get the messages that I needed other people to understand out there. A part of me resents having to do this work because it’s 2020.

Right now I’m telling people that if you’re disabled and you go in to get treatment for COVID-19, you will be denied because a disabled life is not considered worth living in this country and in many other countries. Just because your lived reality is intense and maybe uncomfortable for others doesn’t make it less valid or less necessary for people to understand that 60 million-plus people live like this and that it should change. 

At the end of the day, everything that I do is to elicit change. Change will come from a combination of able-bodied people recognizing that disabled people exist and then asking them if they can accept the way that we’re treated. Is that something they’re really okay with? Then we’ll hopefully mobilize people to support policy changes that will give us the things we need to stay alive. 

A plant’s environment will dictate whether or not a plant thrives or dies. It’s the same for human beings. People just seem to forget that you can’t have a thriving, interesting, and profound art culture without having things like health care or knowing that you can afford rent. I think that’s why art in the U.S. is just kind of bland. When people are struggling so hard to survive, it just makes things really cutthroat and not fun anymore.

Thankfully, none of my work stems from inspiration. It comes from system analysis and recognizing deep flaws within things that we were told were supposed to be like this—the idea that that’s just how things are. My work is about the kind of complacency that lives behind everything from food to health care to housing. We’re told that this is normal and that it’s okay for Jeff Bezos to have billions of dollars while so many go unfed and unhoused. 

For me, capitalism is a bigger threat to my existence than ableism. I couldn’t give a shit if people hate cripples and if people think I’m frightening. I don’t care. I just want health care and accessible buildings and the same basic rights as everyone else. I don’t think that I’m going to achieve this through being inspirational and really positive. At the end of the day, you just become fodder for able-bodied people to recognize that they have a lot of privilege and that maybe they shouldn’t feel so sorry for themselves.

It’s impossible for disabled people to get jobs. I know because I’ve tried to get different positions. Or I’ll get opportunities for shoots with brands and they don’t understand what goes into me getting there, or even being available in the first place, and the fact that I can’t be on set for 10 hours. A lot of people want to have this idea of diversity without doing the actual work. They just want to use you to sell stuff—and sell the idea that they’re like a good brand that cares.

My most recent show was founded on the idea that normalcy is an oppressive idea. Normality and standards are integral to the oppression of disabled people and of people who are othered in some way. Normal doesn’t really exist. My work forced the perspective of what it’s like to exist at the height that I am, in a wheelchair and in my body. It was a really immersive experience for able-bodied, healthy people to understand this—a tiny tip of the iceberg of what it’s like to be disabled and chronically ill. The show was called Built to Scale.

It was initially proposed as the work that I’m doing right now: creating a space that solves all of the interior problems related to “accessibility.” When people think of accessibility, they just think of a ramp or a big enough bathroom. But the height at which we have everything—mirrors, countertop, bars—makes being disabled very, very difficult. The standard countertop height was made for a 5’9” male, which is ridiculous. Who is using the kitchen the most? Who is a kitchen imperative for? 

Imagine waking up and nothing in the world was working for you anymore? It’s not a disabled person’s fault that they’re disabled. The world can be changed, but our bodies can’t be. It’s asking the viewer, Does this really make sense just because you’ve never had to question it before? Because this is something that we can actively change to make work better for people who are short. For elderly folks. For disabled folks. For moms with strollers.

I just want to show people that I can create a space—very affordably and very beautifully—that does not look like what people think of when they think “wheelchair accessibility.” I want to create something that makes able-bodied people so jealous, as well as understand that their concept of accessibility is deeply flawed and incorrect. 

Disabled people currently do not have artist residencies where they can go to make work. My friend was nominated for a Flux Factory disability residency. She uses a wheelchair and the residency for disabled artists was not accessible. This is what I mean when I say that disabled people will never have the opportunities they deserve until things change. 

Having an accessible space is not a luxury, it is not a privilege. It is a necessity. People need to stop making excuses. If I can take a toy hauler RV, add a sliding door at the end of it, a nice, gently sloping ramp, and a kitchen that’s fully accessible all for under $15,000, then what is someone else’s excuse?

I used to go to this Japanese coffee shop in downtown L.A. and their countertops are so low that I couldn’t help but ask them about it. They were like, “Yeah, it’s way easier to make coffee and use an espresso machine when the countertops are lower.” I was blown away that I could pull up to the counter and order something. Usually I can’t even use the pin pad to pay. I mean, where’s my discount for not being able to buy something at a space?

Disabled people, you don’t see us exist out in the world even though there’s so many of us. The way that people feel right now during COVID, this is how the people with chronic illnesses and people with disabilities have always lived. You think that we don’t exist because we can’t use the sidewalks, or we can’t use the restroom, or we can’t get into your office building, but we exist. We just aren’t able to be present in public the way that able-bodied people are because we can’t even use the sidewalks.

It’s funny seeing a lot of art come out recently about disability from people with a lot more of what I call “able-assumed privilege.” Like disabled people who can at least pass as able-bodied and can exist within the built environment the same way. For them, disability is all about identity politics. I think disability is a set of material constraints that, if they were to be solved, we wouldn’t have disability anymore. I’m not tied to my identity as a disabled person because I didn’t choose it. Disability is a social construct that would not exist if these things were solved. That’s what I want. I want accommodations to not be seen as a luxury, but to be the same thing as asking someone what their pronouns are. 

Everyone’s art is shaped by their lived experience, and some people’s lived experiences are more homogenous. The perspective that we have of the world is from a specific group of people with certain privileges that enable them to be artists and writers. I come from a different angle. I don’t think art should just be a mirror of this really monstrous norm. The most interesting art is obviously emotionally driven, but also from a perspective that someone otherwise wouldn’t have. Felix Gonzalez-Torres is my favorite artist of all time, so I think that very much sums up how I feel about using a particular experience of suffering to inform and ask questions about the society that we live in—and time and space and love and these bigger, more universal questions.

I’m on a really strict anti-inflammatory diet for my CRPS. It’s the most effective way for me to not live in an unbearable amount of pain. I have a rebound sympathetic nervous system, so I also can’t take opiates. The first year after my accident, I was kicked out of my dad’s house because of cannabis. My dad is a minister and it was a really big deal to him that I was using weed to deal with my chronic pain. I was already sleeping in the living room because I couldn’t go up the stairs to one of the bedrooms. He kicked me out of his house for having weed on me, because it would be a “bad influence” on my siblings. 

I got really into CBD via Charlotte Figi. CBD has really, really helped me and continues to help my pain levels. I’ve taken two neurology classes in order to understand my own body better. There are a lot of terrible stigmas and unstated rules that come with living in a world designed and created by old, white men. It makes it hard for us to be human, have our needs met, and help ourselves live most comfortably. 

Without weed, I’d definitely be dead. There’s no way I would have survived everything I live with and my surgeries and the pain without it. I think it’s a sham that it was ever criminalized and that anyone could consider it a gateway drug.

One benefit of the intersection between my advocacy and my modeling is that sometimes I get sent free CBD. Rose Los Angeles sent me an amazing spread of CBD edibles—I love them so much. They’re so delicious and they’re really great for my pain. I’ve tried their THC ones, too. Now I take a THC one every night to go to bed. Access to cannabis means I can go to sleep and it means that I can have a nice time despite having the world’s worst pain disease. 

I don’t necessarily always enjoy being stoned, so if I’m having a bad pain day but have a lot to do, I have to choose. I’m not one of these proficient stoners. I think it’s because the type of weed that I need to ingest for my pain makes you very couch potato-y and snacky. Slower, like the stereotypical stoner stuff. I’m pretty Type A, so while it helps me relax, it also can make me more frustrated if I don’t have the privilege or the time to do so. I have a chronic illness and I use a wheelchair. I survived COVID in March and I’ve been facing eviction. So when you have a lot of underlying stress about things that are systemic or are due to unforeseen circumstances, it’s kind of hard to relax. I hope one day I can learn to be a pro-level stoner so that I can be medicated in the way that I need to, without getting frustrated that I can’t do things as well, or as easily.

But sometimes being stoned is really, really fun and it’s something that I do like. My friend Jasmine Marin has this CBD brand called Spill. She and I smoke weed when we hang out and it’s super warm and awesome because that time we have together is dedicated to that.

I feel really grateful every day for those things that I do have that bring me joy, like my dogs, my relationships, my friendships, and my family, and the small things throughout the day that I take an immense amount of pleasure in. 

I love clothes. I get a lot of them for free, or very affordably. I don’t have the privilege of wearing Margiela and luxury designers—that isn’t something that’s gifted to me. I don’t think you need a lot of money to look good at all. Fashion is just another way for me to scam people into listening to me so that I can tell them about disability. Maybe they’ll be like, “Oh, this cripple is interesting, gonna go click on their page.” And then maybe they’ll follow me for like three months and be like, “Oh, there’s some leftist stuff in here. This person’s obviously very opinionated. I’m uncomfortable now; I’m unfollowing.” But I hope I planted a seed at least. 

I don’t want other people’s sympathy. I want people to understand that people with disabilities have all the same problems they have and then some. I don’t want the attention, but I use the fact that people do look at me and stare at me as a means to get it so that I can tell them something that’s important. I wouldn’t even have an Instagram account if I wasn’t disabled. It’s often the hardest thing to be this vulnerable. I really don’t like doing this. But I didn’t see the things I wanted to see being said, so I had to start saying them myself. And I didn’t see the art that I would have liked to be made, so I just made it myself.

This interview has been edited and condensed for clarity. Emily Barker photographed by Jasmine Durhal at their home in Los Angeles. If you like this Conversation, please feel free to share it with friends or enemies. Subscribe to our newsletter here.